Hello, my name is Janet Henson and the gentleman in the photo is my husband, Quinnen. He was misdiagnosed in December/January with Bell’s Palsy. On February 2, we walked into Ascension Jane Phillips, not knowing what would happen. That night, they transferred him to St. John’s main, in Tulsa, OK. We spent the night on the 10th floor, but he was moved to Neuro Trauma ICU the next day. He had 2 MRI’s, a swallow study and an angiogram to check the blood flow to/around the tumor. We prepared for surgery on February 6th, not knowing what to expect. After surgery, he came back to his room intubated. He came back on a ventilator. They said he would possibly need a tracheostomy and a PEG tube because he failed the swallow study miserably. They said it should only be a week….they placed the Trach and PEG tube on 2/9. He spent 4 weeks in ICU. At first he could not move his right arm, but as gained some movement back. Although he has always been deaf in his left ear, the surgeries have affected the hearing in his right ear. He has lost most of his fine motor skills as well. After the tumor board met, OCSRI (Oklahoma Cancer Specialists and Research Institute) said they will not treat him without an evaluation from MD Anderson in Texas as the 3 drugs he needs are not tolerated by those over 40. They said his best hope would be to participate in a drug trial. He only needs a week at MD Anderson, then he can come home for treatment. He was diagnosed with radiation-induced osteosarcoma of the brain. It is very rare. He is unable to utilize radiation as he had too much as a teenager. We have had many scares along the way such as the day his old shunt stopped working and they had to do a temporary one at the bedside, then they eventually changed the valve. We have been at a ltach since 3/10/23 trying to get him weaned off the ventilator. He has gone for as long as 16 hours off the vent - just on oxygen, some days he doesn’t tolerate it as well. Our goal is to get him to Baylor Scott and White for neuro rehab and on to MD Anderson to get into a trial for treatment of the cancer. He has episodes where he passes out when he stands up and has most recently had to have a 72-hour EEG to check for seizures they believe he was having. They have stopped all the Tylenol due to seriously elevated liver enzymes.

I was able to stay with him for a while in the hospital and I had to go back to work. I still stay with him most every night. We are asking for help with everything. I am the only one working and have missed work due to rushing back to the hospital. We will need funds to travel to Texas for therapy and the eval of his brain cancer. Any amount helps.

UPDATE:

We are preparing to bring Quinnen home on hospice care. I am trying to get all the kids here and make funeral arrangements. That’s where the money will go. When the time comes, there will not be a funeral, just a gathering of friends and family. I will update more as I know more.

janet and the kids